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Showing posts from June, 2008

From Lou

Good morning, Last night was the OOB support group and as usual it was packed. We are coming up on three years. I wanted to just tell a couple of stories I heard there that really threw me. First there was a young girl. She went to have testing done and before they even had the results a nurse practitioner said she had end stage liver disease and would die within two years. She switched doctors and hospitals and found out she had geno 3b and has no fibrosis and she has over a 70% percentage of clearing. Talk about bad info. Then there was a man who did two shots, he vomited and they took him off of treatment. Which is definitely the worst thing to do. First they should have taken him off the riba and see if that was the problem. If not lowered his Infergen dose, but he has stage four fibrosis which they told him he had cirrhosis. Totally horrible protocol. The good part of these stories is we got them hooked up with a REAL HepC doctor. I heard more bad and incorrect info...

Good Morning Lou & "OOB" !!!

Lou I wish I could say it surprised me to hear that, when in fact it is more rampant today than ever before it simply means there are not enough  Hepatologist's or Gastrologist's  to handle the growing numbers of hep c diagnosed patients today. The projected increase due to awareness and advocacy work has proven to be very effective, but not to the point that it is no longer needed, it is more important today than ever before as your post suggests the physicians assistant is taking all of the overflow, and they are not qualified to visualize the entire picture. It is a shame that people are given the wrong information and might be led astray from doing the treatments that could possibly save their lives. It saddens me, and it has happened to me as well, nothing was maliciously intended but they are humans just like us and they are not without error.  When a persons life is on the line if they don't have a computer or support group, they are lost in today's w...

WHO LOVES YOU

Great Saturday Morning "Out Of Bounds" You know I have been told many times by people that meet us in chat and then later join us here on the site, that when they first came into the chatroom there was something different about it that they couldn't explain. As you well know I am as silly and funny as I can be for us that have been around for a long time together. We are comfortable with each other and our main goal is to keep you smiling. That is a very important part of doing the chatrooms, leaving for the night with a smile on our faces, and hopefully a renewed sense of normalcy. But back to the subject when we meet these people that say "I felt something in the room that was comfortable and special, it was like I was supposed to be here for some strange reason", when I hear that I immediately know what they are saying. I recognize it as another person that has been led to us, I have seen this a hundred times since 2004. It isn't a coinciden...

Are You Gifted

Good Morning "Out Of Bounds" Look inside yourself today and find that one thing you have been born with as a gift, open it up and share it with all of us . I know there are some good qualities in everyone, especially the people that give their time here making OOB a site that is very different than any other on the internet. We believe very strongly in the freedom of speech here, and you really don't see a lot of it on a support site, We feel it is everyones right to voice their opinions, and to have a place to vent or just coment on anything you wish. We have some very powerful messages here, and sometimes it might seem that we are all happy go lucky glad to be here type individuals, which is fine to an extent, but we are family and we have differences, I for one am probably the most guilty of sugarcoating. I admit that, hell life is a bitch sometimes, and for people on treatment it really sucks, so that's the reason our open threads are so important. We need to hea...